The unique experiences of raising a brain-injured child and her two brothers.

Tuesday, July 9, 2013

Just Smile...

Pushing my alarm and staggering through the hallway toward Elise’s room with eyes still half-closed, I began my morning routine by preparing her medication. Next, I would feed her breakfast through her G-tube, change her diaper (in hopes that she didn’t wet the bed), and reposition her body to prevent bedsores and the stiffening of her joints. The monotony of my morning drill was broken by the sight of Elise, staring up at the ceiling, wearing a smile.

What could she possibly be smiling about?

For the standards that we, as the rest of the world have set, the answer is: Not much.

Smiling is a universal form of communication. Most everyone has learned to connect a smile with something good happening. Elise has taught me otherwise.

In general, each of us sported our first smile between 6 and 8 weeks after our birth. Smiles start as a mere reflex, then move on to a “learned” or social smile, as a reaction to seeing others’ faces or some other pleasing stimuli. Of course, Elise’s blindness kept her from seeing the faces that we inevitably made in spite of the knowledge that she couldn’t see us. We just couldn’t help it.

Instead, Elise’s first “real” smiles were formed in response to outward physical stimuli. We were all but guaranteed a grin from her if we took her little body and swung it vigorously through the air, swooping and swaying in a way that would have frightened most babies. The best reactions from Elise have always come from more intense inputs, although lightly touching her face gives great results as well.

What drives us to smile? Hearing a joke, seeing something beautiful, or recalling a funny moment in time are sure to elicit a happy expression. Personally, I’ve given up on avoiding crow’s feet around my eyes, because it’s inevitable, especially for a frequent smiler. When I think about it, a large percent of our smiles throughout the day are forced, fake, or void of any real happiness. We smile aimlessly at strangers as we pass. I often smile at my kids, trying to hide the frustration I am truly feeling. How about taking pictures? Everyone gives their best grin, and as soon as the camera clicks, we relax our faces as if given bad news. It’s completely natural for us to smile all day without even thinking about why we are doing it. That’s where Elise is different.

She can’t fake smile.

In contrast to the rest of us, it’s just not possible for her to conjure up a smile that is not meaningful. With no understanding of when it is socially necessary, or how to use her face to communicate with others, she is left to gifting the world with her smile only when it feels right to her -- a highly contagious act that spreads from her face to anyone looking her way. It’s like her own little way of “paying it forward” - as if she’s saying, “If I can smile, so can you!”

Proverbs 15:30 comes to mind.

“A cheerful look brings joy to the heart…”

Her smiles and laughter certainly bring joy to my heart, and I have to think that they bring joy to others as well.

Her smile is her heart.

Her smile is her hug and kiss.

Her smile is genuine.

Her smile is comforting.

Her smile is powerful.

Her smile is a blessing.

Gradually, over the years, Elise’s smile has changed. The baby grin has given way to a broad, open mouthed smile, full of big girl teeth. Unfortunately, this is not the only change we have seen. As I peruse through years of pictures taken of my family, I notice a steady decline in Elise’s “look”. In the early pictures, although blind, she always had a twinkle in her eyes. Slowly, as we have been forced to continually medicate her for seizures and self-injurious-behavior, we not only see less of these brighter expressions, but much of the lively spirit has gone with them. She seems distant, disconnected, and void of personality.

For the most part, this is what people see of Elise...

Despite this setback in the outward presence shown in Elise, I am overjoyed that she still does smile, giggle, and full out howl with laughter when the moment hits her.

GiGi laughing with Elise

I can only imagine being her, experiencing life as she does. Although she suffers from discomfort and pain on a daily basis, the one true blessing that came from Elise’s brain injury is the fact that she has no idea what she is missing. This saves her from the heartache of the absence of a life others enjoy.

Elise’s brain injury causes me unending frustration, heartache, and times of deep sadness. What a spectacular tension breaker and emotional gift she gives all at once with each radiating expression. When she flashes her smile, it’s like she takes on new life, surprising those around her that are only used to seeing her stare ahead with a blank look, or cry out while hitting herself. It humanizes her in a way, and opens people’s eyes to a side of her that isn’t marred by her brain injury.

Elise’s smile can be a nice break from the endless hours of her staring, emotionless into space, or crying jags that last all afternoon. They can be few and far between, holding off just long enough to increase my appreciation for each one.

When she laughs, it’s as if I get a little peek inside of her, a part of her that is usually veiled by medication and the effects of seizures on her little brain. If I ever think her cries make me feel helpless, irritable, hopeless, or just plain sad, one smile or fit of laughter fills me up completely, renewing my spirit and resetting my emotional reserves.

There are times when her smile looks as if she has just been told a secret. Others are ear to ear, like a child who’s just been told they’re going to Disney World. My favorites are accompanied by an adorable laugh, forcing me to do the same.

The best kinds of smiles and laughs are the ones that come at the most coincidental times. Such as when someone has just finished telling a joke, or when something funny has happened on TV. It’s great to see others’ reactions as they try and figure out if she actually heard the joke or saw the TV, despite their knowledge that she is deaf/blind.. It looks so convincing that she meant to laugh at that moment!

On the other hand, one particularly frustrating aspect of Elise’s smile is that you never know when she is going to give you one. Most of the time, I can induce a grin with a scratch on the head, or light touch to her face. Other times, though, she stubbornly sits stone faced as I make a fool of myself trying to draw one out for a friend or new acquaintance. Taking family pictures is the most frustrating time. We stand together, everyone frozen and wearing their happiest faces, waiting while my husband or I try all of our tricks to draw a smile out of Elise.

Ninety-nine percent of the time, we end up snapping several pics of everyone looking happy, and Elise looking off to the side in a serious manner, as if contemplating the meaning of life.

Case in point...

I'm sure I was saying through gritted teeth, "Take the picture!"...

I had to give up on this ideal family photo. As long as Elise is facing forward, not hitting herself in the head/face, and not sucking on her tongue, I’m good. Take the picture, NOW!

And so it goes...

* Yearbook photo? Forget it.

* Easter pics of the family? No way.

* In church as the preacher begins to pray? You bet...

Time for a laughing fit!

While we’re on the subject, why did she wake me up at 4 AM with a full-on laughing fit last night? I’m not sure, but who cares? She had a blast. That’s good enough for me (Not as cute, though, at that hour…).

Sometimes people with intellectual disabilities tend to laugh at inappropriate times. The same is true of Elise. She is most fond of laughing while at the library, during ANY prayer or moment of silence, at the movies during the most somber scenes, or as mentioned above, any time between 3-5 AM. We take what we can get…

These kids figure out early on that smiling and laughing is fun, and it feels good. So, why wouldn’t they do it whenever they please? Whether we see their reasoning or not isn’t the issue. We should simply be happy for them and their ability to be happy within themselves. Smiles of kids like Elise are a treasure that never loses its worth.

I have definitely taken away more than merely a good feeling from Elise’s smiles. Instead of finding my joy in what I have, what is happening to me, or in what someone else is doing for me, Elise’s smile is a reminder for me to look elsewhere. We don’t have to look long to find that joy that Elise exudes from time to time. It’s simply the joy of being alive.

No, Elise can’t play in the sprinklers in the backyard. She can’t watch cartoons with her brothers, or enjoy the music we listen to in the car. She will never utter the word “Mama”, or dance with her daddy. Thankfully, one thing that her brain injury DID NOT take from her, is her ability to show happiness, joy, glee, delight, and overall pleasure with the life she shares with her family. No matter how much her light dims, I pray to God that I am always gifted with a grin from her, however small, to remind me that no matter what I’m faced with in this life, there is always a reason to smile.

This is a short video that we made of Elise and her many smiles. I love that we have captured these to remember for the rest of our lives.

(You won't find me making a video of her crying and screaming times!)

Be sure to enjoy this video in full screen & close out the pop-up advertisement :)

11 comments:

What a beautiful post and video Ashley! I can't believe the similarities of our precious little girls! They are truly God's angels here on earth, aren't they? You've truly inspired me to maybe make a "Smile" video of Nykkole also:)Thanks for sharing your thoughts, feelings, and photos!! We are sending hugs from Minnesota!

Thank you, Nancy! Yes, do make a video of Nykkole's smiles... they are so very precious. With all of the negative things that surround our girls in their daily struggles, I thought it would be nice to focus on one of their many positive attributes as well! Especially bc many people don't usually see this side of Elise...

Precious! I'm sure parts of this post were difficult to write, but I read so honestly and so heartfelt. Although my daughter with cerebral palsy is a frequent smiler, I value each one as reassurance that she is finding joy in life. As for Elise's smiles in the early a.m., maybe she's dreaming good dreams! Love the Bible passage! (P.S. My middle name is Elise!)

Yes, parts were hard to write - though, I think writing is a kind of therapy for me! I knew I wanted the name Elise if I had a daughter, and I am so glad that I had a chance to use it. It is beautiful, and frequently used as a middle name!

I am not sure how I found your blog, but I read the whole thing and have been so inspired by you and your family and by Elise especially. She is beautiful! Her laugh at the end of the video was so full of perfect glee. Thank you for sharing your journey. You are an inspiration to me as a mother and I look forward to all of your posts.

Elise has such a beautiful smile. I can see so much joy in her face.I am so inspired by your family because of how much of a positive outlook y'all have of life.Do you have an update on your family?I hope she has a great birthday!God Bless